ATHN Data Quality Counts is helping ATHN Affiliates enrich the ATHNdataset.

The promise of using data for research, surveillance, and quality improvement relies on data that is complete and accurate. ATHN Data Quality Counts provides the critical funding needed to build data management capacity across the ATHN Affiliate Network and enrich the ATHNdataset.

The application phase of Round 15 of ATHN Data Quality Counts is now closed.

Thank You to Our Partners
ATHN Data Quality Counts is made possible by the generous support of The Hemophilia Alliance, The Alliance Pharmacy, and the Indiana Hemophilia and Thrombosis Center. We are grateful to our partners for supporting ATHN Data Quality Counts, which provides critical funding to ATHN Affiliates to enhance their data management capacity and enrich the ATHNdataset in support of clinical care, surveillance, and quality improvement.

Awards are competitive. Successful applicants receive base funding plus additional funding depending on the number of records in which ATHN Core Data Elements are updated in ATHN Systems during each specified 6-month period of the award cycle.

Applicant organizations must be an ATHN Affiliate in good standing and a current user of ATHN Systems.

All recipients are required to address these two priorities:

  1. Contribute Validated Data to the ATHNdataset
    As in previous cycles, all patients with bleeding and thrombotic disorders are eligible. Priority populations for this cycle include:
    • Factor VIII or IX deficient patients with a focus on:
      • Previously untreated patients
      • Patients with a history of or at high risk for or who currently have an inhibitor
      • Patients who have received or who have expressed interest in receiving a gene therapy vector
    • Patients with Type 3 von Willebrand disease (VWD) and patients with clinically severe VWD requiring recurrent use of factor concentrates
    • Patients receiving non-factor products (e.g., Hemlibra or other non-factor products that may come to market during the reporting period)
    • Patients under the age of 18 years old who have had a VTE and are being treated with direct oral anticoagulants and all pediatric patients diagnosed with a pulmonary embolism
    • Patients with rare coagulation disorders especially those with Antithrombin deficiency, Glanzmann thrombasthenia (GT), Plasminogen deficiency, Factor VII deficiency, and Factor XIII deficiency
    • Patients who have undergone liver transplantation
  2. Enter Complete Set of Core Data Elements
    Enter complete core data elements for patients including but not limited to the following data elements: Primary bleeding or clotting disorder diagnosis; diagnosis baseline lab value; inhibitor diagnosis status; inhibitor titers; HIV and hepatitis diagnosis status; COVID 19 diagnosis status, primary medication regimen and dose details; ITI regimen if applicable; surgeries/procedures; insurance category type; comprehensive care visit dates and tele-health visit dates; gender identity and sex assigned at birth; height; and weight.

    Please download this list of current ATHNdataset core data elements.

If you have any questions about Data Quality Counts, contact